University of Utah Center of Excellence in ELSI research (UCEER)
University of Utah Center of Excellence in ELSI research (UCEER)
批准号:
10632012
负责人:
ERIN ROTHWELL
金额:
$99.13万
依托单位:
依托单位国家:
美国
项目类别:
财政年份:
2016
资助国家:
美国
项目状态:
已结题
起止时间:
2016-05-16 至 2024-05-31
关键词:
AddressAdministrative EfficiencyAdvisory CommitteesAffectAwardCancer Center Planning GrantCareer MobilityCharacteristicsChildCollaborationsCommunicationCommunication ToolsCommunitiesCompanionsDecision MakingDevelopmentDisabled ChildrenDisciplineDiscipline of NursingDiscipline of obstetricsEducationEducational ActivitiesEducational AssessmentFacultyFamilyFamily RelationshipForensic MedicineFundingGeneticGenetic CounselingGenetic DiseasesGenetic ScreeningGrantHealthcareIndividualInformed ConsentInstitutionLawsLeadershipLegalLinkMentorsMentorshipNational Human Genome Research InstituteNeonatal ScreeningNewborn InfantPediatricsPhilosophyPoliciesPopulationPopulation Scientist Supplement (R25)Postdoctoral FellowProcessProductivityPublic HealthResearchResearch ActivityResearch PersonnelResearch Project GrantsResourcesScheduleScreening procedureStructureStudentsTestingTreatment EffectivenessUnited States National Institutes of HealthUniversitiesUtahWomanWorkcareercareer developmentcarrier testingcollegecost effectivenessdisabilityethical, legal, and social implicationexperiencefamily supportfather rolegenetic technologygenetic testinggraduate studenthealth communicationhealth disparityhealth literacyimplementation scienceimprovedlegal implicationmeetingsmemberpatient screeningpolicy implicationpopulation basedprenatalprenatal testingprogramsresponsescreeningscreening servicessocialsocial implicationundergraduate student
中文摘要
项目总结
此申请是为犹他州ELSI研究卓越中心续签资金
(UCEER)。我们的中心在2014-2016年间获得了P20赠款的资助,并在
2016-2020年RM1赠款。UCEER主要关注以人口为基础的ELSI问题
基因检测和筛查。在当前的供资周期中,欧洲能源、环境和经济研究中心高度重视
关于新生儿筛查、产前筛查和携带者筛查。对于此次续签,我们建议
将这一重点扩大到也涉及遗传残疾问题,包括成本效益问题
家庭和社区内的治疗、适应和支持以及法律/政策
问题。此外,我们建议处理以人口为本的文物测试所引起的问题。
由直接面向消费者的基因检测公司。我们建议保持一套强有力的努力
让来自广泛学科的教职员工和从本科生到
博士后水平。UCEER已获得NHGRI颁发的R25奖金,与我们的RM1资金有关,
这为认同残疾的本科生和研究生提供支持。UCEER有
制定了高效的管理结构和流程以及强大的员工团队,以
支持我们的研究和教育项目。
英文摘要
PROJECT SUMMARY
This application is for renewal of funding for the Utah Center of Excellence in ELSI Research
(UCEER). Our Center has received funding under a P20 grant from 2014 – 2016 and under an
RM1 grant from 2016 – 2020. UCEER is primarily focused on ELSI issues in population-based
genetic testing and screening. For the current funding cycle, UCEER has had a strong emphasis
on newborn screening, prenatal screening and carrier screening. For this renewal, we propose
extending this focus to also address issues with genetic disabilities, including cost- effectiveness
of treatments, adaptation and support within families and the community, and legal/policy
issues. In addition, we propose to address issues arising from population-based heritage testing
by direct to consumer genetic testing companies. We propose to maintain a robust set of efforts
to involve faculty from a broad range of disciplines and students from the undergraduate to
post-doc levels. UCEER has received a R25 award from NHGRI, linked to our RM1 funding,
that supports undergraduate and graduate students who identify with a disability. UCEER has
developed an efficient administrative structure and processes and a strong group of staff to
support our research and educational programs.
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The Impact of Communicating Uncertainty on Public Responses to Precision Medicine Research.
沟通不确定性对公众对精准医学研究反应的影响。
DOI:
10.1093/abm/kaab050
发表时间:
2021
期刊:
Annals of behavioral medicine : a publication of the Society of Behavioral Medicine
影响因子:
--
作者:
[Ratcliff,ChelseaL, Wong,Bob, Jensen,JakobD, Kaphingst,KimberlyA]
通讯作者:
Kaphingst,KimberlyA
An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots.
对残留新生儿筛查血斑的存储和研究使用的缩短同意书的评估。
DOI:
10.1177/1556264617736199
发表时间:
2017
期刊:
Journal of empirical research on human research ethics : JERHRE
影响因子:
--
作者:
[Rothwell,Erin, Goldenberg,Aaron, Johnson,Erin, Riches,Naomi, Tarini,Beth, Botkin,JeffreyR]
通讯作者:
Botkin,JeffreyR
Previvorship Posting: Why Breast Cancer Previvors Share Their Stories on Social Media.
幸存者发帖:为什么乳腺癌幸存者在社交媒体上分享他们的故事。
DOI:
10.1080/10410236.2022.2074780
发表时间:
2023
期刊:
Health communication
影响因子:
3.9
作者:
[Wellman,MariahL, Holton,AveryE, Kaphingst,KimberlyA]
通讯作者:
Kaphingst,KimberlyA
The Reproductive Injustices of Abortion Bans for Disability.
残疾人堕胎禁令的生殖不公正。
DOI:
10.1017/jme.2023.127
发表时间:
2023
期刊:
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
影响因子:
--
作者:
[Francis,Leslie]
通讯作者:
Francis,Leslie
An empirical assessment of the short-term impacts of a reading of Deborah Zoe Laufer's drama Informed Consent on attitudes and intentions to participate in genetic research.
对阅读 Deborah Zoe Laufer 的戏剧《知情同意》对参与基因研究的态度和意图的短期影响进行实证评估。
DOI:
10.1080/23294515.2018.1449771
发表时间:
2018
期刊:
AJOB empirical bioethics
影响因子:
--
作者:
[Rothwell,Erin, Botkin,JeffreyR, Cheek-O'Donnell,Sydney, Wong,Bob, Case,GretchenA, Johnson,Erin, Matheson,Trent, Wilson,Alena, Robinson,NicoleR, Rawlings,Jared, Horejsi,Brooke, Lopez,AnaMaria, Byington,CarrieL]
通讯作者:
Byington,CarrieL
共 30 条
Comparing Game Facilitated Interactivity to Genetic Counseling for Prenatal Screening Education
-
批准号:10654835
-
项目类别:
-
资助金额:$75.32万
-
财政年份:2021
-
负责人:ERIN ROTHWELL
-
依托单位:
Comparing Game Facilitated Interactivity to Genetic Counseling for Prenatal Screening Education
-
批准号:10491261
-
项目类别:
-
资助金额:$75.39万
-
财政年份:2021
-
负责人:ERIN ROTHWELL
-
依托单位:
Comparing Game Facilitated Interactivity to Genetic Counseling for Prenatal Screening Education
-
批准号:10293056
-
项目类别:
-
资助金额:$70.8万
-
财政年份:2021
-
负责人:ERIN ROTHWELL
-
依托单位:
University of Utah Center of Excellence in ELSI research (UCEER)
-
批准号:10226042
-
项目类别:
-
资助金额:$99.13万
-
财政年份:2016
-
负责人:ERIN ROTHWELL
-
依托单位:
University of Utah Center of Excellence in ELSI research (UCEER)
-
批准号:10474367
-
项目类别:
-
资助金额:$99.13万
-
财政年份:2016
-
负责人:ERIN ROTHWELL
-
依托单位:
Improved Prenatal Genetic Screening Decision Making through Interactive Technology
-
批准号:8869498
-
项目类别:
-
资助金额:$22.35万
-
财政年份:2015
-
负责人:ERIN ROTHWELL
-
依托单位: